Update

Its been almost 3 weeks since Ella's heart surgery! Its amazing how things have turned out. She has been gaining weight (getting chunky), she is very alert and learning new things everyday. She finally started to eat a little bit of rice cereal, but still not too sure about the solids. She has started playing with bigger toys and rolling around more. She even sits up pretty good with a little bit of assistance.
Next week we go in for a follow up echo scan to check on the device that was placed in her artery, it will be good to see how well its holding up.
Thank you for all your prayers during our hard times. I know for a fact all the love has helped Ella get healthy again.

Thank you for being born Jesus

Today for me has been a day of reflecting on Jesus and how grateful I am for everyone in my life. I challenge anyone who reads this to take 5 minutes out of your day and look around you. Reflect on what you have and who you have. I am very grateful for my parents, they brought me up and raised me into a wonderful mother. My kids are my life, I took my 5 minutes to look around today and I could see all the happiness in everyone around me. Sometimes we dont have time to reflect on things around us that should be reflected on. Thank you Jesus for being born and giving me the best parents in the world and a marriage that yes everyone at some point has had to work on things, But My husband is the bestest friend I have ever had. If we could we would be attached to each others hips every second for life. Thank you Jesus for giving me 3 of the most wonderful children. My 12 year old helps and supports me so much, I am very grateful for the spirit in her and the love she has for others.  My other two children are a miracle, at one point in my life I was told I most likely would not be able to have children. Matt and I have had two precious children together. Brayden may be a handful, but his cute personality over joys me. He gives the best hugs and kisses he loves all of us so much. Ella is a miracle, she has been through so much. She is a fighter and she will continue to fight anything that gets in her way. Most days I feel like crying because I want her to do what most children her age do. It takes one person to tell me to bounce back up and know that it will take time. But she will be okay that she has god watching over her. So with all that has been said I am thankful for the love that everyone shares one another and the kindness that everyone has to offer each other. Thank you to everyone that has come to us and given us prayers, love and support for our family and daughter Ella. Today is not about giving gifts or receiving them. Its about reflecting on Christ being born and reflecting on your blessings.

Thank you, Thank you, Thank you

Today is 4 days after surgery and 1 day before Ella turns 6 months. Ella has been doing really good since surgery, she has more energy than she has ever had. One thing that Ella is still not over coming is eating. She is still really low on her feeding. I talked to the cardiologist and she said that it may just take a week to get her back to normal. If she does not get her strength up and start eating better in a week, we will have to return to the doctor and have her checked. It may be that she has become so use to eating less that it has turned into more of a habit. Which we would have to figure out how to get her out of it. Lately she has become more and more excited about playing with toys. She doesnt have many, but with what she has she gets bored easily if she doesnt have something to keep her occupied. We are still having trouble with her eating solids, rice cereal. She wont have anything to do with it. But she is very interested in what we are eating, so we must be getting close.

Before I had Ella and before we started with the surgeries I didnt want to believe that there was good people or I should say a good community of people out there. When Ella had her brain surgery I felt all alone. As I sat in a waiting room by myself with no employees in it on a Saturday morning. I thought to myself what happened to all the good in people. I remember working at my last job and seeing all the help employees would offer for other employees that were going through something similar as I. But I was sitting their all alone and feeling like I was not as important as other moms.

Things have changed so much since I met my two best friends Jamie and Natalie. I started going to a church called SMCC (South Mountain Community Church). I could immediately feel a vibe in my heart of love and compassion . I have never been around a group of people that show that they care about each other.

One of my friends was/is going through a rough patch, and so I started thinking of ways I could help her family for Christmas. I decided to open up a group on facebook called Angel's of West Jordan. In this group I invited others to join around the area to help this family out and give this family a Christmas. I received such a big response I decided that I would ask my two friends to help me with the sight and help more families. We ended up being able to donate to 10 family's that are in need. We have had so many people sending in donations. The biggest of donators is from a paint ball team called Feel the paint. https://www.facebook.com/pages/Feel-the-Paint/108874952483623?ref=ts&fref=ts We have been working with a very sweet guy, I would rather not give his name out unless he feels its ok. This group has also supplied 4 baskets of items to show my 3 friends and I that they appreciate all we did for those family's. So I want to personally Thank him and everyone that donated to our Angel Families. I am so excited to find out how happy he children are on Christmas after they unwrap their gifts.

I also want to send a Thank you to the family that nominated my family to the Sub For Santa this year with Granite School District. I am unsure who nominated us, but I am very grateful for the generosity and love that has been shown to my family in such a hard difficult few months. We were unsure if we would have been able to have a Christmas this year, but with a little help from the community we are going to be fine. The one thing that feels my heart up and brings those joyful tears to my face is all the help we have received.

We also have a surprise visit tomorrow that Matt and I can not wait to see the children's faces. We have had someone donate their time and love to our family. I will not post about this until it happens, and I can have a picture of the event that takes place. But this person knows who he is and you and everyone has opened our hearts up and brought my family such  strength and love.

Thank you ALL for everything you have given us and all the love, prayers. From our family to yours we want to wish you all a Merry Christmas.

Please come back for an update tomorrow on a surprise visit to Ella. :)

Xray of Ella's PDA heart surgery

This picture was taken before the device was placed.... 

This picture was taken after the device was placed, you can see the difference and where the bleeding stopped leaking into the lungs. If you look close enough you can see what the actual device looks like

Thank you!

Its been great being home after such a hard surgery, but I have to say its been an emotional morning too. Last night was not a good night for Ella at all. Normally before surgery Ella would sleep all night without any feedings. Last night we were up 4 times feeding and trying to calm her down. She was in quite a big of pain. On top of the hard night, I decided I would try on her Christmas dress and it ended up being double the size of her. The emotional mom I am right now started crying. Anything that doesn't work out for Ella or anything hard we have to go through with her sends me into an emotional state of mind. I try to be the strong mom, but sometimes I really cant help it.

This is another emotional part of me that I am going to cry writing it. I want to Thank all our supporters and all the prayers from everyone. I never thought we would ever have to go through such a rough time. I always had the mind set that my children would be healthy and that I would never have to face what we have. The thing that really makes my heart strong is people around SLC and in other states (Jen Clark sending baby coupons, Judi Hummel and all my DWS/Hydro parents)  that have not even met my family that is helping us. I have never been the type that likes to ask for help, even if we are down in the dumps. When we came home from the hospital yesterday we came home to a box of diapers that my best friend Jamie dropped off earlier. A couple of families donated over a hundred diapers to Ella, baby lotion and wipes to us. I am unsure who these family's are. But I want to send a BIG shout out to these family's. Thank you very much for your generosity and compassion for my family. I know in my heart one day Ella will read about all the help we (her) was provided in such a difficult time and how much we are grateful for the support. We also would like to thank SMCC (South Mountain Community Church) for their donation. My Best Friend Jamie's group donated a little bit to Ella, to help with surgery. Our hearts are over joyed with how great friends and family can come together and help each other at such hard times. Thank you Jamie and SMCC for all the help and love you have given us also.
A thank you to Festival Of Trees, they came to Ella after surgery and gave her a cute teddy bear that was donated. A little girl named Shaylee designed and made the clothing on the bear. She also wrote a very cute note to Ella to get well. Thank you Shaylee and Festival Of Trees.
I also want to thank my parents. My mom has taken 2 family days off work for us in the last few months and we really appreciate all her love and help with the kids. I don't know what we would have done without your help.
To the doctors, Kauri Sue Hamilton School and everyone else that has done things for us. Thank you, Thank you, Thank you. We are now on a road to success, Ella will soon be able to get back on track and start fighting to get back to what normal children are doing her age. I have faith in Ella and her willingness to learn and get on track. We love you Ella, never give up and always keep moving. You are loved by many and supported by many. Keep up the great strength that you have. We all love you!

PDA Heart MurMur surgery and Hospital Stay

As hard as this is going to be to type, please bare with me. I may make some mistakes in spelling or forgetting something. But I will do my best.

Monday December 17, 2012 we arrived with my 5 month old beautiful girl at Primary Children's in Salt Lake City, Utah at 9:00am.

We did a lot of sitting around for the first little while, but was finally called back to check Ella's weight and taken to a room. In this room they checked her temp, length and even got to put on some baby hospital gown.  The nurse gave Ella some medication that was to keep her blood pressure up and her heart rate stable for surgery. From this room we were taken over to another larger room where we proceeded to wait another hour or so. Finally a anesthesiologist came in and talked to us about what he was going to do during the surgery. That Ella would be put to sleep by oxygen and medication through the IV. He than asked if the nurses told us about a mistake, that they had given Ella someone elses medication for surgery. Matt and I both looked at each other with a blank look " We both said "no what do you mean". The doctor said that there was another Ella in for surgery and that the nurses messed up and forgot to look at the name tags and gave our Ella her medication. As hard as it was to stay calm, we both just asked if it was going to harm Ella in anyway. The doctor said he is not worried and that she should be just fine. Matt and I were pretty upset, but at this point our concern was directed towards Ella.
Next the Dr. Martin, Ella's cardiologist came  and walked us down to the 1st floor to the Cath Lab. We could see where Ella was going to be operated on and we both gave her a big kiss and hug. A nurse proceeded to take Ella as we were taken out the white doors to another room to talk to the doctor.
She said she was going to do everything she could do so that we didnt end up having to have open heart surgery. We signed some consent forms, and was given a pager (just like one I had in high school) and was told the surgery would last 2 hours.
As hard as things were going, we decided that we would go eat some lunch. While eating lunch, I was trying my best to hold back the tears. Matt started to tease me, because thats how he gets his mind off things. Well this didnt help me it made me start crying in public where everyone was eating lunch. Yes, I felt like a little kid that was told she couldnt have a cookie if she didnt eat all her lunch. Than in the middle of it a choir started singing soft music out the door of the cafeteria. I finally stopped crying and than Matt says I bet that choir isnt helping you much are they? I couldnt even look at Matt, I just started crying again. Matt decided that it was finally time to stop picking on me that no matter what he did to make me smile, I was going to shed tears instead. Matt and I decided to head up to the 3rd floor where they can charge your cell phone batteries back up for you while you wait. So as i was sitting there I was able to meet another mother with a child that has needs. It really helped me out a lot to have another parent know what I have and am going through. Her daughter is 7 months and has been through so much. They are hoping they do not have to spend Christmas in the hospital. So I am keeping my prayers open for this family and that their daughter gets strong, able to get home to see what Santa brought her. I am very happy that I met this mother and plan on staying in contact with her through out both our daughters lives. Its amazing how when you are so down and hurting so bad, that someone comes along and knows exactly how you feel. Thank you so much Patty for allowing me to be your friend and be able to share experiences with you. My day felt a lot better being able to talk to you.
Well 2 hours had passed and this little pager went off. So we went back to the first floor to the Cath Lab and of course we were not able to see Ella. But we were able to go into a room with the doctor to find out the outcome of the surgery. Going back to Friday before surgery, Ella had an echo scan and that is where we decided to get the surgery done quicker. Now back to surgery day talking to the doctor, this will make sense in a minute. Doctor started to show us pictures of the surgery and what the arteries looked like before they were closed up and after the device closed it. It was amazing how much blood was taken into the correct place instead of it flowing into her lungs. The doctor was amazed that she was able to get the Cath in her and that she was able to get the artery closed without open heart surgery. Doctor said they would do a Xray later that night to make sure that the device stayed in place. Matt and i was directed to the waiting area on the 2nd floor to wait for Ella to go into the recovery room. We waited only about 15 minutes and our names were called. They would only let one parent go back with Ella, so I went back with her. She was asleep the whole time, except a few times that she got upset in her sleep. Back when Ella had her shunt Ella was nothing like this. She was alert and knew I was there. I was a little concerned as to why she was so out, but I figured maybe the medications worked on her a little different this time. Ella was finally stable to go to her room that we would spend the night in. Ella never woke up fully till about 4pm. She would open her eyes but would it almost seemed like she would hallucinate. She had me pretty scared, so I called the nurse. The nurse didnt seem to think that it was a problem, but that she was going to call the doctors to make sure that it was normal. Come to find out from the anesthesiologist (yet again meds gave to her wrong) He gave her 2 sets of morphine. Doing this could make it last 6 hours in her body and she could keep having hallucinations. As he was talking to me, he was telling me how she was looking around like crazy and than started screaming, kicking her legs throwing a fit. So he decided that he better give her a second dose of Morphine. I told him that I am pretty sure all she needed was her mom, that she was most likely looking for me. She doesnt like a lot of different people holding her and to be in a room full of strangers, I am pretty sure she was confused. So because this doctor didnt think before he gave my 5 month old another dose, he did it anyway. Ella ended up being out of it for pretty much the whole night.
Her oxygen levels would get really low 70;s and the only way they would bounce back up is if we used oxygen. The nurse decided about 11pm that she would take the oxygen away and just have her oxygen level go low. So even with me upset and voicing my opinion and that I would have liked to talk to a on call doctor. I got told no that I couldn't and to deal with it. I dealt with it as much as a mother could, Ella and I got to sleep around 12pm. At about 5:30am Ella woke up out of her sleep and started coughing/choking. I sat her up, put her arm in the air and patted her back. While the nurse sat there and starred instead of helping.  Thankfully Ella calmed down and went back to sleep. By morning her oxygen level was stabled, but she had a small cough. The doctor came to see us and wanted an X-Ray done before we left.. So we went down and had it done, by the time we came back up we were able to get discharged. Dr Martin said that Ella's heart condition was worse than what it showed on the Echo Scan on Friday. That she is very glad we didnt wait any longer to have this surgery done. Her artery was 2mm open, when it should have shut on its own after 24 hours of being born. Ella is now at home with our family, very sleepy and exhausted from everything she had to go through. But I call her my Angel Miracle. She has been through so much in such a short period. I am praying that we will be able to get back on track and start working with her on doing things. Dr Martin said she suspects that Ella will get back on track with after a while with children her age. It will be great to see Ella that eats normal, and doesnt get exhausted as fast. Hopefully she can make it through a full physical therapy appointment after this.

We finally got home and found that we had a box full of about 100 or so diapers for Ella, baby lotion, box of wipes and a $25.00 gift certificate to help us with food, gas and such for her surgery stay.
Thank you to the Angel's that have watched over our family and given us these gifts. They will help us more than you know!

Thank you all for the prayers, love and support again. I truly believe that all the prayers have helped and guided our miracle Angel to getting better. Now for the next few days, we will stay indoors away from the cold and keep recovering. Thank you all again! Love you all.

Hydrocephalus

Normally I would have information faster about things my daughter has been diagnosed with, but I during our last surgery we were not informed correctly about what my daughter has and why the shunt was put in. I really hope that we are more informed in the future.

Before Ella was born I joined a few groups for parents of Dandy Walker Children. I learned so much from other moms on the DWS site and what I may be up against when Ella was born. I have only came across one other family besides us in Utah that their son too has Dandy walker. Hopefully I give the correct information. But he has had 4 shunt surgeries. He was diagnosed with not only Dandy Walker but with Hydrocephalus. After Ella had her shunt put in, the mother asked me if they diagnosed Ella with Hydrocephalus because normally they would put a shunt in the front of the brain to drain fluid from this syndrome. We were only told during the surgery and whole stay that this was put in for the Dandy Walker.
So when we went in Thursday I asked a lot of questions, ones that I didnt even think to ask when she was in the hospital. My main question "Does Ella have Hydrocephalus?" The doctor looked at me funny thinking I should know this question. He proceeded to say that the reason why the shunt was placed was because of the Hydrocephalus. He said that the Hydrocephalus is caused from the Dandy Walker. I was thinking to myself "wouldn't that have been great to know before you placed the shunt?"
So, Ella has been diagnosed with Hydrocephalus which is enlargement of the ventricles in the brain.
I would like to share a link from the Hydrocephalus foundation. There is a link to donate to the research and cure of Hydrocephalus, while its Christmas and I know a lot of families are having hard times this year. We should all donate to this cause, and find a cure for many children out there including my daughter Ella. I wish we could find ways to find a cure for everyone that is suffering from an illness/syndrome, this is one of my biggest wishes!

Click the link to follow and learn more about one of Ella's 3 conditions.

                                 http://www.hydroassoc.org/

Procedure of PDA

Below is a link I found on What will happen in Ella's surgery. Her surgery is at 9am Monday morning at Primary Children's Hospital in Salt Lake City, Utah. She has the sweetest, most caring cardiologist preforming the surgery. Ella lights up when Dr. Martin walks in the door.


http://www.aboutkidshealth.ca/En/HealthAZ/TestsAndTreatments/Procedures/Pages/Patent-Ductus-Arteriosus-PDA-Closure-in-the-Heart-Catheterization-Lab.aspx

Taking the good news with the bad news

Yesterday we had an appointment with the Neurosurgeon for an after shunt surgery check. The doctor has diagnosed her with hydrocephalus which is enlargement of the ventricles in the brain. This is associated with Dandy Walker Syndrome. Doctor was very impressed with Ella and her learning and growth. We will re evaluate Ella in 6 months on her shunt.

Today we were given bad news, which we expected for the last month. But its harder when you hear the bad news in person. Ella will be going in Monday night to have surgery in the Cath Lab. The doctor will try to insert a catheter into her groin, if all goes well and the catheter fits than they have two choices to close the artery that did not close after she was born.

1- Insert a spiral type device
2- Insert a cork type device

Doctor will not know till she see's Ella''s artery to know which one she will need to use. But she is pretty positive that Ella's artery is too large to fit a spiral. So we will have to go with option 2. Option 2 has a tendency to cause more heart problems. If this happens than we will reschedule and have open heart surgery in January. Doctor will know right after she inserts the cork if its going to cause further heart problems.

IF the doctor can not insert a catheter because of Ella's weight, than we will also have to reschedule for heart surgery. 4 weeks ago the doctor put her on less water, more formula to gain weight. During these 4 weeks Ella only gained a pound. She is weighing in at 12lbs which is very small for her age.

If we end up scheduling heart surgery, the doctor is scheduled out a month. So it would be in January, we are doing this surgery as a semi emergency surgery because Ella is hardly eating and not getting the nutrition she needs, she is also not breathing normally.

I broke down when the doctor mentioned surgery, she assured me that this condition will not damage her heart or her brain. She said that we need to get this fixed so she can grow and be able to develop. This makes me feel a little better. But anyone that has a child that has had to watch them go through surgery or go through something complicated knows that this isnt easy on the parent or the child.

We all have had a really hard few weeks with Ella's symptoms increasing and knowing that we were going to have to face this appointment and schedule surgery. We knew when I was pregnant with her what we may face, but it has been a lot harder going through it than just knowing about what we may face.

Our support from everyone is beyond what I thought we would have. Everyday I think about everyone and how much love, support Ella has. The world is not all bad , UN trusting people after all.I wish I could wish us a Merry Christmas and a Happy New Year at the end of this post. But all I can offer is my love and gratitude for everyone that is there for our family.  Praying to Jesus to bless our family with support to strengthen our family and to make sure Ella's surgery goes well. Sending love and hugs to everyone.

Physical Therapy at 5 months

Today we had Physical Therapy, it was an emotional/learning day. A parent with a disabled child always has the thought on their mind of how far along is she delayed? I started to tear and she said that children learn at different paces, however Ella is about 2 months behind on her age. This was really hard for me to hear. On the plus side Ella was able to show Melinda how to roll on her back from her stomach, put her binkie in her mouth, and even hold her bottle. Ella has started to pass toys from hand to hand, but still has some work on that.

This time we will continue to work on everything we have and start to teach her how to sit up in her bouncer.

The Physical Therapist was here for a hour 1/2 and Ella was really good for about 45mins and than she fell asleep. This is caused by her PDA Heart MurMur that will be fixed later this month.

All in all Ella did a great job today, she proved that she can do things. I am so very proud of her and her accomplishments. Thank you Melinda, we appreciate all your time and hard work you do with Ella. You fill our hearts with so much joy.

Future Appointments

Well the holidays are almost over and than we will be back to going to doctor appointments.
This Monday we will do our 3rd ear testing with Ella at Kauri Sue. I am going to try and make sure I feed her before we go in and hope I can keep her asleep. They are thinking she is failing the tests because shes awake and a wiggle worm. So if I can get her to not move hopefully this will be the last test.
We also have an appointment for Brayden this week with Kauri Sue. The Physical Therapist thought it would be a good idea to have Brayden checked also just to make sure he is growing and doing things on time. So Wed someone is going to come to our house to evaluate him and than we will be going into Kauri Sue to have his health evaluated. Brayden has always been ahead of schedule so we are not too worried. But its good to have him looked at just to make sure.

December appointments. This is where is going to get hard.

Ella is scheduled for a CT scan and neurosurgeon appointment on December 13th. This day we will look at Ella's current shunt and make sure its draining as its suppose to. We will also be looking at the fluid behind her brain to see if the shunt is taking some of the pressure off with the shunt. If the shunt is not helping the fluid on the back of the brain, they will schedule a surgery date to go in and put a second shunt on the back of her head.

Next Ella will go back to the heart doctor on December 14th. We will be doing another ECHO and seeing how things have progressed over the last month. The goal has been to get some weight on her, Dr Martin said that the more weight we get on her the better, she wont have to do open heart surgery and she will only have to block the artery with a spiral wire. If she does not gain the weight than we may have to look into open heart surgery and using a cork type of device to close the artery. If we end up in this situation it MAY cause other heart issues. Right now we are going to keep our schedule open the week of Christmas. So depending on DR Martin hopefully surgery after Christmas but before January. The only reason why we would want to get it done around those days is because both my parents are off of work and can help me out. Matt has no vacation time or sick time at work. So getting any time off is pretty much a NO. So with the help of my parents and Matts we will get through it.

Hard times have slowed down for a moment, but I know its going to be getting hard again very soon. I am just glad that we have supported Family and Friends to get us through all of this. The one that needs the most support, love and prayers is my precious miracle girl. Its amazing how strong she is and how fast she gets over things. Ella may be going through a rough patch right now, but we will get through this and she will grow up knowing what she fought when she was a baby.

I had to take this from my friends page because I believe it.

“So we fix our eyes not on what is seen, but on what is unseen, for what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18

Thanksgiving

This year we went to my parents first and had dinner. My parents make such a wonderful Thanksgiving dinner, I loved everything. The best part was sitting down with My parents and each of us going over what we are thankful for during dinner. Being asked that question I have hundreds of things I am thankful for, I cant just say one thing. But currently my highest thankful for would have to be my children, they are my heart and soul. Ella has been doing really good. I am so glad to see her doing things she would normally be doing at this age. She does have a slight delay, but with the help of Melinda our Physical Therapist we will work on things. Last night Ella discovered her tongue, its cute to watch her. She also started to put her binkie in her mouth all by herself with no help. If I am laying with her and playing on my cell phone, sometimes she will take it out of my hands to play with it. I think she is actually trying to get attention from me, mom stop what you are doing and look at me.
Anyway, back to Thanksgiving. After eating dinner at my parents and visiting for a bit, we headed over to Matts Parents. We had a second dinner with them, everything tasted great their too. Aunt Terri and our cousins brought us a big kitchen garbage bag full of clothes for Ella. We are sure thankful for the help with clothes, kids grow out of clothes so fast its hard to keep up. Our friend Natalie has been helping us also with clothes for Ella. We are so thankful for the help. While we were at Matts Parents Brayden was playing with his cousins and Marian, he loves being the center of attention. While he was playing with the toys their he came across a small toy toilet that belonged i a doll house of Marians. He would flush it and play with it, does this mean he may be interested in potty training? Hmmm we shall find out soon. Brayden has carried it around with him since Thanksgiving. Hope its a sign of get me out of these diapers so I can use a big boy toilet. After Matts parents we were so sleepy and drained that we went home and hung out. About 9:30pm Marian and I decided we would go to Walmart and find a few birthday presents for him. Thinking we were going to be fighting a BIG crowd of people, cars lined up across the street from Walmart and parking lot full. We came across a parking spot really close to the doors. We went inside and yes there was a lot of people, but it was almost as if we were going there on a Saturday. It wasnt bad at all. The only difference I saw in going on Thanksgiving was that instead of standing in line for 30 minutes on a regular day and only two lines open. All lines where opened and we didnt have to wait for anyone. We were in and out of walmart faster than we ever have been. We will have to remember that for next year. Next was going home and sleeping till 6am. Ella decided that she was going to stay up all night being fussy and not wanting to sleep. So I pretty much stayed up all night with her, got up at 6am. Marian and I went to Fashion Corner in Draper with our BFF Jamie. We were going for Boots and a jacket for me. First 100 customers got a free $10 gift card. We got there at 7:30am store opened at 8am, no lines at all no one was even standing outside. So Jamie suggested going to beans and brews real quick to get coffee. Now keep in mind when we left there was no line we could have been first in line. As we headed back to the store we noticed a lot of people outside. The line had started while we were gone, awesome enough it wasnt a 100 people. So we stood in line and waited for about 15 minutes. The longest wait ever, boots flashing in the back of my sleepy eyelids. Finally the line started to move. All three of us got our gift cards and headed in. We all kept losing one another, but in the end we all got in line to pay together. Marian got a really cute purse free with the Gift card she got and some sunglasses. The jackets went way to fast so I ended up not getting one but I was able to get 2 boots, one pair free with my GC. Jamie was able to get boots, shirt and I was so tired that I dont remember what else haha. We all had a great time, I cant wait to go next year! This

Matt stayed home with the kiddos and reported that Ella didnt do so good. But Brayden was great.

Till Next year!!!

Ella sleeping after surgery

Toys

Ella started a new thing today, if i put a rattle, Binky or toy in front of her she will take it out of my hands and play with it.

Monday 5th discharge

We were so excited to be able to take Ella home. Ella had a pretty good day and again that night she started getting really sick. Every time she would have a bottle she would have the runs and even vomited all over her and I. She was very fussy and we couldnt calm her down again.
I called and talked to a neurosurgeon that was on call it was about 6:30am. I felt like I was talking to a wall. He was half way asleep and didnt make since on what he wanted me to do. So instead I hung up and called the pediatrician, the doctor said that I should get her back up to Primary Childrens and be looked at. This stay ended up being a 3 night stay with no progress. No diagnose, no answers nothing. I felt like we were sleeping at the hospital as they the bill tallied up! The doctors didnt know what to do but send us home. So we are home and continuing to get better.

I met a few people along my experience that placed a strong strength in my heart. Its amazing in bad times like this who comes in your life. I was taking a much needed break and started to walk the kids down to a play area on the 3rd floor. A lady happened to get in the elevator with us and she happen to look over at me while I was trying so hard to keep strong. She asked if I was okay, and suddenly the tears started rolling. I told her about Ella and how worried I was about her. She came out and asked if we could talk some more. Come to find out she was the Chaplin in the church. We went in a room with one other  Chaplin and we said a prayer for Ella. I have never felt the stress, worry and anxiety lift off my body as we talked and prayed for Ella. It was an amazing feeling.

I believe that people come in our lives at good and bad times. Those bad times strengthens us up to keep moving. That night i had so much courage, I look back at that day and know that everything will be ok as long as i keep myself strong.

I want to personally thank my husband for giving me breaks, my parents for visiting and bringing us dinner, To everyone that called about Ella and prayed for her. Also thank you STG for the pretty flowers you sent Ella, they are beautiful.

Please continue the prayers as we continue to see how Ellas health goes. Your love and support means the world to us!

Hospital and Shunt placement

This is going to be a hard blog update on me, Bare with me.

November 1st 2012 Ella started screaming from about 10:30pm and continued on for the next day. Matt got up and walked around the room with her, I took her downstairs in the recliner, held her tight, changed her diaper, nothing helped. We decided that we would wait during the day to see how things progressed. Later that day we were still dealing with the screaming and I decided to call an on call doctor to see if we should go to the hospital. The doctor said that it was up to me as the parent. If I felt inside that this was not normal for Ella than I better take her. So Ella and I left around 7pm on November 2nd and headed up to Primary Children's in Salt Lake City. We arrived in the Emergency room, which is always a headache because all you do is wait around. But we finally saw a doctor and they suggested we get a CT scan done on her to check her Dandy Walker. (Screaming a lot can sometimes mean an infant is having pressure in the brain and its causing a headache) Ella did a great job in the CT scan, she was looking all over trying to figure it out.
About a 30 minutes later a neurosurgeon came in and talked to me. I didnt have a good feeling about this talk. She started to tell me that between the CT scan done a few months ago and the one today, that fluid had doubled the size in her brain. Ok so this is where I couldnt stay strong. She said that she will need to admit her to the hospital and do an emergency shunt at 8am November 3rd. I was pretty upset and it seemed like anytime someone would try to talk to me I would start crying.
Going back to when she saw the neurosurgeon the first time I was told she wouldn't be needing a shunt that she should be great, that sometimes children are born with fluid but never show signs or never need a shunt placed. What happened between that visit and this emergency visit is unknown to me. About 2 hours later they finally took us up to a room we shared with another mom and her child. I had requested for a big bed, so Ella and I could cuddle together. My heart was so hurt all night, all I could do is look at Ella and see that she had no clue what was going on and that she was ok. The next morning approached. A nurse came in and said its time for surgery, I carried Ella in my arms, 2 floors down and to the door of surgery. The nurse said I will take her now, she will be okay we promise. I gave her the biggest hug and kiss, as I wiped the tears from my eyes. I had them take a blanket that her Grandma Cowan made for her into surgery to comfort her and know I was there waiting. The doctor had said that the surgery would last about a hour. It had seemed like forever, I was pacing all around the waiting room, crying, praying, thinking of her. What seemed to be like 2 hours ended up only being a 15 minute surgery. The doctor came in talked to me and said everything went well and that I could head back and see my girl in 20 minutes.  Again me pacing the floors with a tissue next to my eye as I waited. I went back and saw my Ella, She was in a little baby crib, her eyes were open, but so confused as to what was going on. I could see a bandage on top of her head, one behind her ear and one on her belly. We went back up to the room, this time I wasn't able to hold her. But I was able to stay by her side and let her know I was there. Ella had a hard rest of the day and night. They had her on morphine, lortab and Tylenol to help with the pain. The next day we woke up and I couldn't believe it. Ella was smiling, kicking all happy. It had been a few days since I saw her happy face.
That morning the doctor came in to talk to me and said that  he felt that she would need a second shunt placed in the back of the brain. That the first shunt would help the top of the brain, but he was unsure about the back. So we were scheduled for surgery Monday. Monday came and the doctor had a ct scan and xray done on Ella at 7am. At 8 am he came up and said that he thinks she may need one, but wanted to hold off to see if the first one would help drain some of the fluid n the back of the brain. So he decided that we could be discharged and make an appointment to see him next month.

Bad Weekend

Friday night about 11:00pm Ella started to become very fussy screaming, we couldnt calm her down all night. At 7am I checked her temp and she was at 102.1, I called her doctor and he was very concerned with her since there was no other symptoms. We spent the morning in the hospital running tests. Sometimes a fever can be linked to DWS, so they did tests to see if Ella might have a disease that is associated with DWS. 3 nurses and I held her down and put an IV in her scalp to draw blood and set up fluid. This was very odd to me, I have never seen a IV put in the scalp. According to the nurse this is used quite often in infants in the hospital, its easier to get a IV in the scalp than the arm or leg because of all the moving around a baby does. It was pretty hard on me to watch this and see Ella suffer the hurt of it. Bu I also knew it was for a good cause, so they could figure out what was going on. The doctor came in and talked to me, he said that everything came back normal. That he is unsure why she is running a fever. He said that she could be coming down with something, it just hasnt shown up in her yet. They decided to release her pending if her fever got high again. Ella's fever hasnt gone back to normal range all weekend. The lowest it has been is 99.6, which is a fever in a infant, just not a dangerous high. So far no other symptoms are still showing as of this morning. I have contacted the doctor and waiting for a call from him.

The concern I have is her PDA and her DWS what if this is something associated with one of those? Thank you for all the prayers that have been over flowing. Thank you to my Aunt LaRue for putting Ella's name in the temple, she has done this since Ella was born. We love you Aunt Larue, thank you for thinking of us and all your support. Also a HUGE thank you to my friend Jamie, she also has a prayer request in to SMCC, we have support from people we havent even met. Thank you to my parents and all other family and friends that have prayers and love for my beautiful girl. I just know with all the prayers and support we can make it through all of this bumps. Ella has a lot of love and support!  I will update with any news.

PDA

Yesterday we had Ella's 4 month wellness visit. Doctor came across a heart murmur, he was very concerned and got us into an emergency visit with a heart doctor Dr. Martin at Primary Children's.
They did a lot of heart tests on her heart EKG, Ultrasound of the heart and many more. Come to find out Ella has a PDA

Patent ductus arteriosus

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Patent ductus arteriosus (PDA) is a condition in which the ductus arteriosus does not close. (The word "patent" means open.)
The ductus arteriosus is a blood vessel that allows blood to go around the baby's lungs before birth. Soon after the infant is born and the lungs fill with air, the ductus arteriosus is no longer needed. It usually closes in a couple of days after birth.
PDA leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels that carry blood from the heart.

The doctor would like to see if it will close on its own in a month. But If Ella develops weight gain, or stops eating than we would need to get her in quick. If the PDA does not close on its own we will have to either take a catheter in and close it. If Ella is too small for a catheter than we will be forced to do open heart surgery.

Please keep your thoughts and prayers with Ella as well as our family as we fight this! The more prayers the better chance we have of fighting this! Many thanks and love to the support.  

update

I have been quite a slacker on updating the blog lately. Thought I better find sometime and get it updated.

Ella has shown some great signs of meeting her milestones. Tuesday the 16th of October we had taken our dog Oliver in to be seen at the Vet Emergency, he had a really hard day vomiting. As we were waiting to hear on his blood results. Matt came from in the waiting room into me waiting with Oliver and said Ella has started laughing. He said "watch" as Matt tickled her around her neck and chest she started giggling. It was so cute. It wasn't just once it was a lot of times.

Yesterday I tested her to see how alert she is, I walked from one end of the room to the next. Ella would follow me with her eyes and move her head as I walked around. She kept her eyes on me the whole time. Well not the whole time, while Brayden was trying to be involved she would also watch him.

Her hand motion has become great also. When she wants a binkie or bottle, instead of crying first she will put her fingers and fist in her mouth.

I have started to put her in her crib for about15 minutes while I try to get ready in the mornings. She loves her musical toys that go around in a circle above her head. She smiles so big at them and puts her hands up for them. She also holds things now, toy keys, rattles, her binkie. She takes them to her face, sometimes even accidentally smacks herself with them. OUCH!

Ella has been having a hard time keeping her head up, which does have me a little concerned. But I will talk to the Physical Therapist about that this week. She also has a wellness visit this Wed. So we will see how big shes getting.

As far as the neurosurgeon we dont need to see him for 6 months unless Ella shows signs of pressure in her brain. We also saw the orthopedic surgeon a few weeks ago and she said that Ella's hip is 100% developed now. We will see the ortho in 3 months to follow up with an xray to make sure that things are still progressing.

While Ella has shown a lot of improvement we still have a full year ahead of us. I have learned that I can not compare Ella and her meeting her milestones with normal 4 month olds. Children learn on there own terms and what one may be doing the other may not. Its been hard for me to realize that learning things is not going to happen overnight, its a process and sometimes it can be a very long process.
At 4 months I started feeding Brayden solids. But it was because he was sitting up on his own. Ella is doing none of this and I most likely wont start her till 6 months.

Please keep Ella in your prayers, we need prayers at all times. I really believe that all the prayers we receive for Ella is helping her succeed in things that I didnt know if she would or not.
Thank you for all your support and love. Its been quite a journey for all of us the last 4 months, but the journey makes us stronger. The strength in us will continue to grow as we go.

Physical Therapy

Today we had Physical Therapy, we did more paper work than anything. We set up goals for the next 6 months to achieve. Because of Ella's low muscle tone, she is going to develop slower than I child with normal muscle tone. Which part of me feels really bad, but I also know if we keep on things that she will be okay. We are going to work on making her neck stronger so hold her head up and rolling on her left side. Right now Ella is favoring the right side, she rolls over on it when I am changing her diaper and just laying there. She needs to be rolling on both sides equally. We are going to also work on her holding things, rattle ect. So far she holds things, but she lets go after a few minutes. I am so proud of Ella and the strength she has. Sometimes she gives up and lets her head go to her chest, but I watch her closely and can see that she really wants to try. Early intervention has been such a blessing. I have had parents tell me that early intervention was never told to them and now there children are way behind on developing.

We have our appointment Oct 8th with the orthopedic surgeon to go over her hip. If she ends up in a brace its going to delay things a little bit with her developing. But once the brace is off, we will get back in gear to get her back on track.

Ella was diagnosed a few weeks ago with Thrush, we were able to cure it with a medication from the doctor. But we woke up this morning and its back in full force. So the doctor has called in another medication to hopefully take it away forever. Keeping our fingers crossed.

As far as Ella's acid reflex shes doing great. The doctor put her on Zantac and Previcid and since we started she hasnt cried or arched her back. So hopefully these medications will continue to work and not cause pain.

We have been working on Ella crying in her car seat while in the car. She has done a little better with keeping her acid reflex under control but its still really bad. So we had a suggestion today to swaddle her in the car seat. So we will try that next and see if we have any progress. Any suggestions would be great?

Thanks to all that reads our updates, we appreciate all the support and love for our beautiful girl!

Appointment with pediatrician

Today we had an appointment with a pediatrician. The doctor looked at both of Ella's ears and said that he saw no infection or fluid. He also sees no redness in her throat. The doctor thought that if she failed the hearing that Ella might have started a cold or something else. So far we are not seeing anything and are not too worried about the re testing of the hearing. We are sure she will pass. He also said that her thrush infection is gone, that we only have to do 2 more days of the medication to make sure it doesnt come back.

As for her being very fussy and not calming down. He really thinks her acid reflex has got worse. So he changed Ella from Zantac  to a stronger medication.

We also talked about Ella and her screaming in her car seat. Ella's doctor said that his daughter did the same thing till she was 6 months. He said we are doing everything we can. That she will come out of it, but it might take a while.

Ella was also weighed in at 10 lbs 4oz, its amazing how fast my little girl is growing. She was born at 6lbs and in 3 months she is already 10lbs. Ella makes us so happy, her cute smiles and her love for us. We love you pumpkin!

Early Intervention Kauri Sue Hamilton

On Thursday the 20th, I took Ella to an evaluation at Kauri Sue. We met up with a great friend of ours Kimberly Butterfield, Kimberly was very sweet and helped me watch Brayden as we had Ella evaluated by a nurse. The nurse asked all about her history and my history during pregnancy. Nurse did an evaluation on her eyes and Ella did a great job following the lights. Ella than had a hearing test and passed her right ear, but her left only passed partially. The tech said that sometimes when babies do not pass, that it could be fluid caused by an infection.

Ella will be re tested on October 1st.

We were told that Kauri Sue will do physical therapy at our home every other week till Ella reaches 3 years old. At that time Ella will bus to Kauri Sue to learn things.

Ella has a lot of help and we are hoping with all the help she has that we can get passed the DWS and show that she can live beyond the learning disabilities.

I have had a few people say that DWS is not a disability. I have thought about this the last few days, and this is what I have to say about that.

Dandy Walker Syndrome symptoms vary from child to child. DWS could show, but never have a symptom. The symptoms that do show can go from slow learning, slow at developing, slow at crawling and walking. Or it could go to the extreme of being in a wheel chair and never being able to do things When people say that our children that have DWS is not a disability. They are wrong, no one will ever understand what you have to go through on a daily basis with a DWS child. Ella may have low symptoms as of right now, and we may have to watch her close over the next year. She could just have the fluid on her brain and no symptoms. Or over a course of the year she could develop problems that could require more help or even surgery. The disability she has is that she cant learn like a normal child. I can suggested if anyone wants more information to do research on it.

People can sit back and say its not that bad. To that I say be in our footsteps. Since Ella has been born, I have had at least 1 appointment to take her to. Last week we had 5 appointments. Every day, every two hours we work with Ella. Teaching her to hold her head up strong, by doing this it is going to help Ella strengthen her muscles. Ella has low muscle tone and she needs the extra help to allow her to do things like we do. We are also trying to teach her how to roll on her sides which we do this every 2 hours everyday. Ella is slowly learning from all the exercises but she still has a lot to go.

We know a lot of people dont understand and they dont know the meaning of DWS so they dont understand what we are going through. Please research it!!!! The more people that know, the more we can try and find a cure for this. DWS children deserve to have a normal life like us. and I will make sure our sweet Ella is able to be just like us.

Physical Therapy

Today we had a Physical Therapist come to the house to evaluate and to set up regular appointments for Ella.

The Therapist asked me a lot of questions about how Ella is doing, I let him know about her right hip being 50% under developed. He said that this is caused from DWS, that Ella has a small amount of low muscle tone. (Low muscle tone is caused by DWS)

The Therapist looked over Ella, and gave us some things to work on.

Home Program
1. Ella is doing well with her vision and movement. Try to encourage increased head control by playing with her in positions that
require her to lift and hold her head up. You can do this while she is playing on her tummy. Also try to hold her in a "football" hold to
make her support her head up to look around. Give her lots of visual stimulation with pictures and toys. This will also increase her
head control and strengthen her visual tracking skills.

2. Try tummy time each day for a total of 20-30 min/day. You can break this up into short bursts to keep her from getting too tired.
You can vary tummy time by placing her on your chest or use a small pillow under her chest.

3. Practice rolling with Ella by crossing her legs and allow her to roll her head and trunk in the same direction. You can do this right
after a diaper change so you are doing it 9-10 times a day. Be cautious with her right hip that you don't pull on he right leg.

4. Sitting is another good way to help develop trunk and head control. You can sit with her in the corner of the couch or in the
Bumbo chair with close supervision. Sitting will strengthen her back and neck muscles and give her more to visually look at.

I asked the Therapist what her future is looking like. Unfortunately there really is no way of knowing. The only thing we can do is work with her and teach her things. We will have a better way of knowing how her future will be when she reaches 1 years old.

So now till Ella is 3 years old they will come to the house and do therapy on her. When she reaches 3 years old she will be taken to Kauri Sue Hamilton School to be worked with. Than when she reaches 6 years old she may or may not have to stay at Kauri Sue, she may end up being able to go to a regular school.

I always feel so sad and hate the unknown, as I told this to the Therapist. He did say that he has worked on children with DWS around Ella's age that have been worse off. That she is doing great, and everything she is doing right now is great. So we will continue to do what we are doing and try to fight this! 

Follow up call from pediatrician

I just received a call from the pediatrician, I told him the news from the neurosurgeon and he is so happy. He couldnt believe how great of news we received. He suggested coming next month to measure Ella's head and than after that in 2 months. He said we will keep watching her and make sure that everything is going to go great. I also let him know that we are starting early intervention today and he was very happy to know we are staying on top of things.

We are overwhelmed with the response of family and friends wanting to stay on top of Ella's progress. Thank you everyone that has asked to be added to this blog.
When Ella gets older and sees how many people have supported her over the years, I know she will be over joyed at the response. I have had some people ask if they can write something about Ella, to give her good thoughts, prayers and tell them how much they love her. So when she grows up and looks back at this blog she can see that everyone loved and cared so much about her well being.
You are welcome to comment below to her or even send me a note that I can post in upcoming posts or even save in her baby book for her to read when she grows up.

I do have to send a shout out to her Sister and Brother. They help me so much with taking care of her. Marian and Brayden love her so much and are always so concerned about her. Brayden holds her hand, helps with getting her blanket, binkie, bottle, and even a kiss on the cheek. Its amazing that my 21 month old knows so much and is so caring to his little sister. Marian has also helped out a lot with helping at her appointments, making bottles, watching her for a few mins so I can clean a little around the house. I have such great and caring kids, I am proud of them all. This isnt a easy thing for any of us to go through and having family and friends be by our side going through it makes us stronger. Thank you all for your support. I will be posting on her Physical Therapy later today!

Second opinion with Dr Marion Walker

Today we had an appointment with a new doctor for a second opinion. We saw Dr. Marion Walker at Primary Children's, we have been told by Ella's pediatrician that Dr. Walker is the best neurosurgeon there. 
I was going into this appointment with the mind set that if something bad is said to try and keep calm. I was becoming pretty anxious waiting for the doctor. I paced the room with Ella and finally he came in. He asked a lot of questions about Ella. 

How is she eating?
How is she sleeping?
Is she learning to do the things she should as this age?


My response, She is right on schedule. 

Shes alert, She sometimes makes oooo sounds, Smiles constantly, Holds my hand up to her chest as she sleeps, Always has to make sure where I am and that I havent left the room. She started kicking her toys in her bouncer, and lately she has been holding her head up pretty good by herself. 

As far as eating. Shes doing pretty good about 3oz every 2 hours. Sleeping she is sleeping all night with only 1 or 2 feedings. 

The doctor checked her head and said that everything feels normal, no bulging, her head is measuring small, no swelling. 
He said that she doesnt have Hydrocephalus and really thinks that she would have had it by now. 
Dr Walker said that when baby's are born with fluid on the back of the brain (DWS) and they are born with no symptoms, they may never have symptoms. He said he would like to see Ella in 6 months to reevaluate and at a year he will do a MRI and make sure that everything looks good. Until than he recommended taking Ella to her  pediatrician to follow up every month and have her head measured, just to keep an eye on her. 

This is very positive information, we are excited for what we have been told today. We know there is a small percentage that things could change. But at this very moment we are happy that things are looking up for Ella and she may be able to live a normal life. 

I want to thank everyone for their love, support and prayers. All your love and positive remarks have given our daughter hope of a new life.

3 months on Sept 22, 2012

Wow, I can not believe that Ella will be 3 months on the 22nd, time has sure gone by fast.

Little of things I have noticed in Ella in the past day. She has started to notice her voice a little more, it almost sounds like shes saying mum. I took the kids to Hobby Lobby earlier this week and when I looked down at Ella in her car seat. She was holding her toy in her hand, now I dont know how that happened because she hasnt done it since. But it does give me hope and thats all I need right now. Ella is now addicted to her mom and I dont mind at all. I have to show her that I am still here or she starts screaming. When we go for car rides she screams till she is back in my arms.When I have her in her bouncer she will get glued into the TV for a second, but than shes back on tracked trying to find mommy. Her eyes will follow me all over the room, she cries if I leave the room. As we are speaking she is in my lap while I write this blog. She loves her mommy! Today we contacted the doctor because her infection wont go away off of the 1- medication we chose. So we are going to try a new route and hope it helps. This one we give her once a day for 7 days, she has to actually swallow it for it to work, this medication runs through the blood stream and corrects the infection. if we dont see any improvement by Monday we have to contact them again and go from there till its gone.

Next week is our big week of appointments, Ella has 4 appointments.

Monday- appointment to get pictures taken.
Tues- Second opinion with neurologist at the Primary Childrens by the U.
Wed- Early Intervention Physical Theraphy
Thurs- Check hearing and Evaluate Ella for Early intervention

But we do have a exciting guest coming to stay with us, we are so excited. My bff Emily from years ago when we were younger is coming to visit from Cedar City. I cant wait to spend some time with her. Its been such a long time! The kids are all excited to see her to. Especially Marian. She has said how happy she is coming and that Emily is such a sweet girl.

I will post an update of what happened at the appointments at the end of the day.

For those of you that take the time to read this update on Ella. Thank you so very much, thank you for thinking of her and supporting her. We need all the support and love we can. If you are reading this blog please let me know. I would love to know who all keeps in touch, as I may put this to a private blog. Love you all!

Staying strong

What a busy and hard Monday! Monday we went to the doctor in the morning and saw a on call doctor. Ella was diagnosed with Thrush. The doctor gave us three options.

1- Medication to be given 4 times a day till Thrush is gone.
2- Medication that will discolor her mouth
3- Medication that could potentially damage her liver

So no doubt about it, we went with option 1. We were instructed to give her 2ml, 1 ml in each cheek 4 times a day. We were not given any other information but this.

Ella's regular doctor called me today and asked how she was doing. Keep in mind I have never heard from a doctor himself. I have always been contacted from a nurse. I told the doctor that I havent really seen much of a response to the medication. He asked if I have been doing it after a bottle, of course I was doing it before a bottle to take the bad taste from the medication out of her mouth. We were not informed to give it to her after a bottle. So I feel stupid and now we are going to give it to her after her bottle.

Ella also had an ultrasound later Monday. The doctor said he read the results and they read that Ella's right hip was 50% immature. He gave me the orthopedic surgeons phone number and told me to get Ella into him asap. The soonest we could get Ella in is October 8th. The radiologist said that they will most likely put Ella in a brace that takes up almost the whole body, but the head and arms. He didnt mention how long she would have to be in this brace.

I feel really bad that she has to go through all these problems. I sit here and wonder if I might have played a role in her having so many problems. If I had done something wrong during pregnancy. I know not everything can be perfect and we all have flaws. But why my sweet daughter Ella, why does she have to suffer and go through so much. I start to think what if I didnt drink that pop or I ate better, would that have made a difference? During my pregnancy at 22 weeks, when we found out that Ella had DWS. I started crying wanting to know what I did and what I could have done to Ella to make her have DWS. The sweet doctor gave me a huge hug and told me that it was not my fault, he repeated over and over "This is not your fault, you did nothing wrong". This is caused by a bad chromosome. I look back at this moment and how hurt and confused I was. I use the strength Ella has and I use that myself.   I look Ella in the eyes and she has no worries, no stresses and is just as happy as can be. She rolls with it! What a beautiful girl she is and how strong she is. She is my pride and joy! We will continue to fight our ways through this and we will make it out on the top. As Brayden says "Happy". We will continue to be happy and love each and every moment we have together.

My

Ella's Appointment

Well due to my emergency surgery we were unable to make it to Ella's appointment. So its been rescheduled for Sept 18th. She has been doing very well so far. We are continuing to monitor her and watch her grow. She is such a sweetheart, we love her so much!

Surgery

As you can see below, we have been quite busy over the last week. I was almost done recovering from my c section with Ella. When doctors started noticing that I wasn’t healing all the way from the surgery, I went in for an ultrasound and a CT scan. The images showed that I had a 17cm large mass inside of me. I went for a consultation on August 27th, I started hurting really bad in my pelvic area, I had a hard time urinating. The doctor said that he would prefer that we hold off and do an ultrasound in a month to see if mass has decreased in size at all. I stated my opinion that I did not want to wait and wanted to get it out of me. Dr became very nervous and had another doctor come in and go over my history. This doctor said that he didn’t think it would hurt to go in with a scope and look around and see what it was. We scheduled a scope surgery that Wed the 30th.
We waited for about 2 hours to go into surgery. Meanwhile Matt had a deadline at work and had to get it done. So he worked as I sat there nervous. I had noticed over the last day that my stomach had swollen up quite a bit and that the pain was getting worse. As they took me to the surgery room I noted my concerns to the doctor. While I was in surgery, Dr Brown noticed that the large mass had grown 4cm since he saw me on Monday. It was 2 cm under my belly button on Monday and as of Wed it was 2 cm above my belly button. The Dr decided that it was not worth doing a scope that he wouldnt be able to do anything. He cut about a 4 inch incision up towards my belly button. While in surgery he found 2 litters of yellowish fluid in cyst and it measured 10 x 20cm. He was very concerned as to if it could have Cancer, so he sent it off to be checked. Cyst did come back non cancerest. I ended up spending 3 days in the hospital recovering as Matt stayed home with the kids. It was really hard only seeing my kids for a few hours during the day. But I knew I had to start recovering and get myself to where I could take care of them when I got home. Brayden was scared of the hospital bed and nervous about how bad I looked. He wouldn’t come near me in the hospital. The only time he would come by me is if we went for a walk in the hall and he helped me walk holding my hand. Marian was a big help and helped Matt take care of the kids while I wasn’t there. I was finally able to come home on Saturday Sept 1^st; they removed my staples and said that recovery is 6 weeks, no lifting except for Ella. It’s been quite the challenge to get myself healed. When I got home I couldn’t walk on my own or hold Ella. On day 7 today I can now walk pretty well, I walk with Ella, but can only do it for a few minutes. I am still in some pain, but it’s getting better.
I talked to the nurse yesterday and she said the doctor and practice has never seen a cyst bigger than 9cm. That they were pretty concerned about the cyst that I had and couldn’t believe it. The doctor  also commented that he should have listened to me when I said I wanted it taken out, instead of him saying to wait. He was glad I was determined to get it out.
I am so thankful for my husband, kids, Parents and Friends. When things go wrong, and you have friends show up at the hospital you know they are your true friends. Especially when they are there for you and more concerned about you than your own blood.
I had a lot of time to think about things and review my life while I was in the hospital and on the mend. Life doesn’t have 9 lives; you are only here for a short time. The time you are here should be spent caring and taking care of others. This is one of the hardest things I have been through in my life and I am so thankful for everyone that was so caring. I had a lot of friends and families send me there thoughts and prayers and I appreciate it so much. My BIG thank you is to my husband, kids, parents and my best and true friend Jennifer. You all helped me know that there are people out there that care and that would do anything for you. Wish everyone was like that and was there for their family. But we all are different and we all have our own opinions on how to care for someone or something. Make sure that you are there for family and friends!

Long due update pictures